Thursday, August 28, 2014

Are You a Retard?

Amanda saying, "Hmm..."

Today I would like to address the label, "Retarded."  I have heard this misused twice in the past three days.  In both cases it was applied to my sister Amanda, who has Down's syndrome.  In the first instance, the word was used by a cousin (in-law) in a flustered attempt to define Amanda's "condition." She finally finished with, "Well, there are a lot of names you could call her, but she's a child!"

My response to that was, "There are a lot of names I could call you, too.  But she's an adult."

In the second, the label was used by the producer of the shows my dogs perform in (more accurately now described as, "my ex show producer") in an attempt to hurt my feelings and insult me.  The phrase was, "You're retarded, just like your sister."

My response to that one was, "Thank you."

Ignorance is found in all walks of life and in all professions.  I have experienced the gamut of reactions to Amanda, but the most offensive ones often are from people who I thought would know better. One Michigan library director said, "We have a coupla Down's Syndromes who work in the cafeteria." 

 Uhmmm... A couple of WHAT?  Excuse me?   And you work WHERE?!  I think the title of my next book should be, "I Am Not My Disability!"

I have friends who, when joking around, will say someone is, "retarded," or, "such a retard," and then they catch themselves, look at me and apologize.  The funny thing is, when it is used in this way, it doesn't even bother me.  I have never been hypersensitive about the label, "retarded."

The actual definition for "retarded" is, "Occurring or developing later than desired or expected; delayed."

To me, this would more accurately describe someone with a learning disability.  For instance, I could say that I myself am mathematically retarded.  Ironically, my cousin-in-law is apparently emotionally, certainly socially, and perhaps intellectually retarded.  The show producer is intellectually, emotionally and socially retarded.  And both, in terms of understanding disabilities, are suffering from educational retardation.

Amanda, on the other hand, has an extra chromosome.   She is academically as advanced as her chromosome collection will allow.  She is not "late" or "delayed" at all in her emotional, social and intellectual development.  Therefore, I can state pretty accurately that she is less of a retard than the three of us.

So, before you take offense to the word, "retarded," remember that it does have its applications.  The question is, is it being used correctly?  To muddle it over seems a good idea, because it might save you a knee-jerk reaction.  Or better yet, to use one of Amanda's catch phrases, "Think again!"


Tuesday, August 26, 2014

The North Side of Down

"There are two powers in the world; one is the sword and the other is the pen. There is a great competition and rivalry between the two. There is a third power stronger than both, that of the women."
- Muhammad Ali Jinnah
It has been a rough couple of years:  Rougher even than my divorce, or the subsequent foreclosure of my home.  What made the past few so difficult was the loss of my parents, magnetized by the suffering of my poor sister, Amanda.  She has Down's syndrome and became the object of a feud between two siblings vying for guardianship.  Amanda had made her choice, but the entire family was still dragged through an excruciating legal process that lasted for nearly two months, immediately following my Dad's death.
During these weeks I devoted nearly all my time attempting to comfort and reassure her.  Though terribly depressed, grieving, confused and scared, she handled the situation with tremendous dignity.  She handled it better than I did.  I was furious.
Amanda is in her forties.  She spent her whole life living with my parents in the remote Northern Michigan village.  She was their buffer, their companion, their servant (often unwilling), and their endless source of entertainment.  Amanda is a brilliant wit and, since she is universally underestimated, her snappy one-liners can ambush the innocent bystander.
For instance:
Me: Did you have a good birthday?
Amanda: Yes.
Me: I would hope so. THREE birthday cakes, jeesh...
Amanda: Yeah. Tomorrow it's back to normal food. Snickers and Milky Way.

One thing Amanda and I have in common is that we both love to write.  During those terrible weeks in 2013, we found solace in sharing our thoughts, and putting words on paper.  Even then, I saw the start of a book happening.  We were living it.  Every day that we were together, we made notes.  Often Amanda would initiate these sessions by saying, "Let's work on our book."

It brought tremendous comfort to both of us.  Now I am finding that most memoirs having to do with Down's syndrome are about babies, written by the parents...  People reeling from the reality of how their life will never be the same, and not in ways they expected.  But Amanda's story is one of later years, and hopefully will serve as a warning to folks about getting their affairs in order.  I hope that this story will spring from the ashes and help someone. 

The manuscript is in the final editing stages now; our story is told.  We are searching for a publisher, but teetering on the brink of indecision, as there are so many self-publishing options available.  Please follow us on Facebook for regular updates.

THE NORTH SIDE OF DOWN will describe, as no other book has, what life is like growing up with someone with Down's syndrome. It will show how sometimes those with the softest voice have the most to say. It will show how appearances can deceive, not only in those who seem simple, but in those who seem the most loyal. It will examine how the legal system can paralyze a disabled person in the wake of the loss of a guardian. Perhaps most importantly, it explains the concept of true forgiveness.